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After some time I was able to sit in a less supported wheelchair, the rotastand which I used to help me transfer seemed to be doing my core some good. It’s funny thinking about those days now. I would be sat upright and in order to show someone how much thought and effort I had to put into sitting, I would tell them to watch what happened when I would relax and I would automatically flop to my left but over time, the amount I flopped over was becoming less. I remember in my early days of rehab this was still happening because my physiotherapist examined me in my induction to the unit. When sitting I wold flop to the left and when standing if my feet were together, I would fall to my right. It was really bizarre so I always stood with my legs quite far apart because the wider my base, the more stable I was and felt. My head was, and it still making me feel like I’m floating sometimes. I really can’t explain it but it also feels like the opposite at times.

When I was in Royal London my daughter was more used to seeing me which was lovely and I thoroughly enjoyed watching her twirl about and mingle with nurses. Her chatting was relatively less because she was in an unfamiliar setting but eventually she caught on that mama was in “huptal” and if anyone was leaving our house she’d ask them “where going?” and wanted to put her shoes on assuming they were off to see me. She still didn’t want to come near me, if she was tired and needed a nap she wouldn’t even want to be put on my hospital bed. She also managed to make my bed malfunction a couple of times by pressing every button possible in multiple combinations and/or all at once. The main problem with this was the bed would’t go low enough for me to safely transfer. We even tried turning it off and on again. Nada. Then some Healthcare Assistant (HCA) came along and she fixed it.. multiple times. They had to call her from the adjacent ward and I acted like I didn’t know what happened each time. No hablo Ingles. In fact, no hablo at all!

In the last two weeks there was all this drama over my secretions (I wasn’t swallowing saliva as one normally would) which was gathering on top of my lungs. This would cause excessive coughing which hurt my head. I knew I had secretions which needed to be removed and my signal was using my right hand, four fingers together almost touching my thumb like tongs repetitively. That was my suction signal and because I couldn’t speak I was the patient who always banged frantically on the side railing of her bed. That was my call. No buzzer needed. The doctors and physiotherapists said the tube in my neck should be smaller so I remember on maybe August 23rd a doctor who was very butch came along to change the tubing size. Again, I couldn’t speak so I gave him the thumbs up (that was my thing and if you were really nice you got two thumbs up) and mimed something just before he began. I mimed it but my sister lip read and said it aloud, ” ‘Do a good job’, she said” – I used a movie quote on him. At that moment I thought that was equally funny and stupid. He proceeded to change my tube and an oxygen mask was placed over my nose and mouth whilst they took me off my main oxygen supply. He was being supervised by a lovely older Australian Doctor. She was brilliant. There was a moment when I couldn’t breathe and although it felt like ages, Aussie doc was telling me how great I was doing and how relaxed I was so I assumed it was all good and normal. Then I threw up a little in the mask which was surrounding my mouth but that’s when I was able to breathe again so I breathed and saw the vomit bubble. Classy. The change in tubing went really well and was painless so I was pleased. Every time a nurse suctioned me they had to suction around the tubing coming out of my neck(same as before). That’s where I was coughing from, not my mouth so I’d have to cover my neck when coughing which was amusing. They would aspirate me, which meant removing mucus from my subglottis using a syringe. They would then measure and record the amount of mucus extracted. Apparently this was all I was waiting for to become zero and then I could finally be decannulated and have my trachy removed and I should be able to speak. In theory. Over the next week or two this was closely monitored and it was suggested that my oxygen flow was changed to warm oxygen to help my secretions loosen up easier so I wasn’t having such severe coughing moments. It did help. I should also mention that when I was on ITU I was ‘restrained’ to put it, bluntly.

On ITU I was naughty. I was scaring everyone and my Dad was ready to tape my hands down. So it turns outs it’s normal for people who’ve had brain surgery to be agitated and fight and tug at stuff… I was trying to pull out every tube in me. I actually remember fighting with various members of my family, trying to push them away, punching one of my sisters in the face (bonus points for it being the nose, that counts as a bullseye, surely), I remember constantly being told to behave and the number of times I was firmly told “No!” was beyond ridiculous. And I understand why now because one night I pulled out five tubes; my catheter, a cannula, trachy tube, NG tube and my head drain which was draining blood from the cerebrospinal fluid in my brain. That one was very bad and I needed an emergency CT scan to make sure I didn’t screw my brain up. The thought of it scares my family to this day and grosses them out. Alhamdulillaah I didn’t cause more harm.

So anyway, I had these large wool stuffed, lilac mittens that looked like boxing gloves put on me. In my dream I was feeling unwell but the mitts were irritating me. That’s when I punched my sister in the nose. Nobody knew but my right hand was tingling and I wasn’t really with it and obviously unable to speak so I did everything I could to get them off. In my dream I saw relatives sat on my bed and my parents too, it seemed like they were ignoring me so I was hitting them to get their attention to say take these things off me. I remember faking a fever and putting a hand over my forehead to say I’m ill remove them, it didn’t work. I mimed how can I sleep like this I need to put my hands under my cheek, it didn’t work. Instead my sister said I could sleep in any position because she saw me sleep every day in random positions and told me to stop lying, the mitts weren’t coming off. Apparently one nurse loosened them towards the end because she made a deal with me and I said I wouldn’t take them off. I put my hand between my knees and successfully removed a mitten, my expression was apparently comical and I looked so chuffed with myself. The stories of me highly sedated were hilarious. I actually wish I met myself back then. Eventually the mitts were removed and I did promise to behave myself otherwise the mitts were going back on. Those things traumatised me. I can’t believe nobody believed that I needed them off. My right hand was tingling. I noticed that when I left ITU and was with it, the tingling got worse, with the cold oxygen tube on my shoulder for my trachy, it felt like my hand and arm were numb, I told my family who relayed it to the nurses to pass on to the doctors and consultants during the ward rounds each morning. Massaging it helped for a while but it was spreading to my right leg. This tingling and numbness was slowly overtaking half my body and I didn’t know it. I was eventually given medication for this about two weeks later (being a mute, essentially, meant noone knew the true extent of my problems and what I was feeling. The pain was from this numbness wasn’t so bad then but it’s nuts now. I have a high pain threshold so I tend to not make a fuss of pain. I think it reached the point when it was keeping me awake at night that I was finally given medication). After my trachy tubing was made smaller and I was given hot flow oxygen, my numbness felt better. It was the peak of summer and there I was with a fluffy, fat blanket I requested from home. I was never cold but now I was freezing. I assumed the cold was making me numb so I just sucked it up.

Things were a lot better with the warm oxygen, however, during a physiotherapy session, I was sat up and threw up a whole load of mucus, not out my mouth but it was gushing from my neck, to the point that one of my physiotherapists swore, I guess it took him by surprise and there was only so much he could catch but he was really cool about it and noticed pretty early on that I had a really irritated cough that would always get bad when I moved or sat upright. I’m so grateful he spotted this and was on the ball because I just remember being concerned about my arm being numb. He immediately paged a specific consulting team and raised his concerns with them, they came down and I was nil by mouth (or as I like to say, nil by nose seeing as nothing was entering my mouth that evenining until after my procedure the following morning)the new tube was too long so was irritating me and my cough was getting worse and when I thought about it he was right. I had my two physiotherapists, occupational therapist and speech and language therapist around me when I threw up from my neck. Very classy. I wrote a note to them saying i had a phobia of vomit, I really do. This led to a discussion about morning sickness. I didn’t have any so that was an incredible blessing for me. I also wasn’t intolerant to any foods which was even better but being pregnant for the rest of one’s life isn’t an ideal or possible cure for food intolerances.

so going back to my trachy tube being changed, a dr from another hospital (turns out it was my local) was there and he and my dude PT did that trachy change. I would just like to say that despite it being a smaller tube, when the dr inserted it into my neck again it was so incredibly painful and quite traumatising. Thankfully my PT was there, talking me through and comforting me the entire time, telling me how well I was doing and how brave I was. He knew how to do the change but wanted to be shown once more before doing it on a patient. Later down the line when there was discussion about weaning me off the oxygen and making me breathe completely on my own again, I was worried they’d change my tubing again but it turns out it was just a straightforward removal of the tubing and I should be good to fly solo from then, hopefully.

Throughout these weeks, seeing my daughter gave me so much joy and pleasure to just observe her. I didn’t realise then but she was a cruicial part to my recovery. I didn’t know the extent of my problems back then or that I needed rehabiitation care. Somewhere in my mind I assumed I would stay at The Royal London with all those same patients and soon I’d be walking and talking like my old self, dressed in my own clothes and then I’d go home and that was it. I was so wrong and so naive I’m willing to blame the meds and not my lack of intelligence.

During this time I was so happy, I also had a permanent goofy smile on my face after surgery (my facial expressions are normal now, thank God), my recovery and outlook seemed good to all and I was happy being surrounded by my family and daughter, especially on Eid day. Every day back then was a good day. I did wonder if I was indenial because surely it wasn’t normal to hear you were so ill you almost died a few times and be that happy. I even wrote , “I don’t know why I’m smiling so much consideing I almost died” to which my sister replied, “It’s because you’re grateful.”
And I was, I still am. Emotional times. Pass the tissue box. Until next time, people… Peace!

Today marks my 2 month walkiversary and it feels good to have my independence back. I’m so grateful to be home with my family and most importantly my daughter. My family are the most amazing support network anyone could ask for. They understand when I can and can’t do something, when I feel tired, my feelings and emotions, although they don’t fully understand it’s great that they know to just let me be me and whatever is going down is a part of who I am. A lot more has happened in my life than I’m letting on and I have shared various details with very close friends or trustworthy people who I know won’t let me down. I’m a member of various stroke survivor websites and groups online. I often find some people giving up, swearing, having enough and sometimes wishing the stroke finished them off. I understand it, I really do although not once, alhamdulillaah (praise be to God), have I ever had that thought. In fact I shared a little more on a group today and this was a part of what I said in response to someone feeling sorry for me:

I couldn’t be happier with my life right now. Yes it’s hard but it’s been such an incredible experience and I wouldn’t swap it for anything else. I’m in early days compared to most people here. Stroke was August 1st. Was in rehab for 3 months. Been home almost 2 weeks and trying to be a mum to my now 19/20 month old baby girl. I haven’t been happier in life i don’t think. God bless me and my family ❤

I honestly don’t regret any of what I’ve been through in the last four to five months. Obviously we can’t regret a stroke because it’s not like we have control over it and it wasn’t a choice, especially in my case where I was born with something that has changed mine and my family’s life, probably for forever. As incredible as the journey has been, I don’t wish this hardship on anyone else. I’m in contact with some patients from rehab, some have been discharged and others are still on the unit, one in particular was messaging at 4am because of insomnia due to pain and I was awake because I was reluctantly co-sleeping with my toddler which basically meant her head was actually on my head for part of the night and I had to keep changing sides because she was all over the place. Anyway, I thought it’d be nice to share how I felt about my position in life right now. I could have been a lot worse than I am so I am grateful for that and so much more. If you think your life is bad, take a look at someone whose life is currently a little worse or harder than yours and be grateful. Your challenges in life could have been worse.

Speaking of challenges; my daughter. This post is after all, about parenting. I mentioned the first time my daughter saw me. The very moment and how I felt. My family could see that seeing my daughter made me happy although noone knew the pain I was feeling. It was a bittersweet. The most bittersweet feeling a person could ever have. I loved her and loved seeing her, in fact, I loved everything about her. All her “perfect imperfections”. If you’ve ever stayed in hospital for three or more days you’ll quickly discover magic fm is the favoured radio channel amongst most, if not, all hospital and ambulance staff. That song played whilst my daughter was visiting and thinking back to that moment, those words kinda fit. Seeing her was so sweet but the pain was what was bitter. After every physio session and after every false alarm to the toilet, I’d get back into bed and I’d be at an angle. I’d have to shuffle so I was straight and more often than not I’d have to try to slide myself up the bed using my limbs which didn’t work properly at the time. Sometimes I’d just quit and be like ‘you guys are on your own right now, you shift me’.

My daughter came to visit me one time and I mimed round and round the garden like a teddy bear on her whilst my other sister said the words, hoping it would remind her of the relationship we once had. She wasn’t having any of it so I stopped and told my sister that was enough. They hung around for a few hours and as usual that was great. My daughter was very well behaved on most days and the nurses absolutely adored her.

Pretty soon, I was told I was getting a wheelchair. I imagined a regular wheelchair but this one was a little funkier, comfy and had a neck and head support like Professor Stephan Hawkins’ one minus all his other gadgets. They started me off slowly. I had to sit in the chair (I make it sound so sinister) for an hour a day. ‘Easy’, I thought. The first day I did almost two hours and then the nurses made sure it was just an hour after that but pretty soon it was getting exhausting. It wasn’t a matter of just sitting in a chair and that was it. I had to concentrate and put effort into sitting up. I’d have to actively think and try to engage the muscles in my core and force myself to sit straight. I couldn’t slump or relax, I had to pay attention to my posture and position. The moment I stopped concentrating, I would flop to the left but this never happened, I’m pleased to say. Unless I was demonstrating it to my family.

So how was I able to get from bed to chair I hear you ask. It was an amazing piece of equipment called a rotastand. Okay, it’s not that amazing and I only ever used it when I was in the Royal London hospital, but me and that thing were close! I truly believe having to lift myself on it engaged my core which helped strengthen my muscles and made sitting easier. Particularly on the day when I had nine trips to the toilet and six of those were false alarms. Woohoo for the three that weren’t! I also had an Occupational Therapist who gave me my first test and established I only had to work on my higher level thinking so I made that hour in my chair fly by whilst doing sudokus, wordsearches and crosswords. I quite like crosswords now and the metro puzzle page was my best friend on weekday mornings at breakfast in rehab.

When my daughter first saw me sat in a chair she was less anxious around me, she was taking her healthy baby snacks from me and talking a little. She seemed less frightened of me. I was in awe of her when she was walking. I was, and am, so grateful. Occasionally, I’d cry tears of joy, thanking God that my child was okay. She was and still is, my most prized possession. I was so happy when I saw her each day. The pain was always there but my heart was filled with an abundance of joy and gratitude. I had to be patient, very patient. This was a long road (even longer than I initially thought). It was as if seeing me sat in a chair was one step closer to ‘normal’. My family were amazing at making me feel normal and really made me feel so proud of myself for being able to sit. They too, were very proud of me and happy because I could have died several times, I could have been paralysed but Thank God for His endless mercy, He made me able to progress, kept me safe and in good health. My memory was intact as was my intelligence, ability to understand and more.

There was one day where I felt nasty… you have bed baths and sadly that doesn’t include washing the hair. I asked when I could wash my hair. Turns out the nurses had to check with my doctors because the stitches, or rather, staples from my craniotomy were still in my head and that’s my biggest scar. First we had to establish if they could be removed and then when I could have my hair washed. Taking the staples out was painful and the sound was disgusting. I remember thinking surely being stapled couldn’t have hurt that much because I don’t remember that pain but cutting them out with clippers was loud painful and it was grazing my head. A while in I told the nurse to stop, she just finished throwing everything away and told me she was nearly finished when I bucked up the courage to endure the pain. As soon as she was done clearing up I told her she could carry on. What can I say, I’ve always had terrible timing, ha.

One day, towards the end of my stay there, one nurse insisted on giving me an actual shower, up until now I had been told I was allowed to because of my trachiostomy, the tube and being hooked up to oxygen. This lovely nurse said she’d put a towel around my neck and my first shower in five weeks felt like the ultimate spa treatment. I felt amazing, I felt so clean and refreshed. That first shower was just days after Eid and I was slightly gutted I wasn’t squeaky clean in time for Eid and also gutted i missed Eid prayer in the park. Anyway, everytime I transferred from the bed to my chair it took one or two nurses, a whole bunch of unhooking and hooking me back up once I was settled into the chair. I even had to make sure my external bladder was with me at all times. I’ll never forget the day my physiotherapist hooked it onto his pocket and was so casual about it. He hooked a pee bag to his trousers. Gross. Even if it was mine. Still gross. But they’re used to it I suppose.

I remember being so proud of myself for getting out of bed. That rotastand was my best friend. It’s so sad. I saw a rotastand in rehab about a month or two after getting there, is it sad that I got excited?!

Everyday after seeing my daughter in the Royal London was progress for me. Seeing her motivated me and it gave me something to work towards. My recovery was getting faster, I was constantly laughing, joking and sometimes, up to no good.

I had always wanted to homeschool my daughter, being a teacher made me quite snobbish about schools and I frowned upon them. I didn’t know how long I’d be in that state, I didn’t know if If’d ever be remotely like my old self, i didn’t know if I could teach again. So I made plan, I told myself if I have no choice then I’ll put my daughter into school, reluctantly. She wasn’t attending playschool or toddler sessions yet, I was just looking into them before my stroke. I had to wait until she was a little more sociable and comfortable playing in the park because for me, that was a good indicator for how she’d be interacting when it comes to other children.

I wrote a note to my family telling them to enquire about a preschool near us that I mostly approved of. My family initially though I didn’t know my daughter’s age but I explained there was a waiting list and I need to apply just in case I wasn’t able to do what I planned. My daughter’s happiness was everything to me. Seeing my parents happy and grateful I was alive was everything to me. My dad is one of those soft and quiet guys, he is rather panicky if anything happened to his loved ones, especially his children and I’m the youngest in my family. I remember being very concerned about my dad and how he was feeling. I made sure he was always happy, smiling and okay. At the time he was in charge of looking after my daughter whilst I was in hospital since I was with my family when it all happened. I wrote a note for him on one occasion, “Always be happy and always smile for (daughter)”, it read. I folded it and stuck it in his pocket. No matter what happened to me I wanted to make sure my daughter was surrounded by love, laughter and happiness. This particular event happened before I found out my dad did CPR on me and was the first person to actually save my life, by God’s Will, of course.

As mentioned in my previous post, despite being through the worst of it all and surviving, my coughing would cause such bad headaches and being suctioned numerous times a day would cause so much pain I would turn beetroot red and felt like I might die on two particular occasions.

My family had continuously told m how brave and strong I was to endure what I had. Sever times my family wouldn’t complain of their pains or ailments because it was no comparison to what I had endured. Now though I can say this. My family were grieving, for the first three weeks of me being in hospital they were the strong ones, they had to be brave, my dad got so choked up about it he didn’t really talk to others for a good week or so. One of my sisters was ready to prepare for my funeral, another one was ready to raise my child the way I would have wanted. My family consistently showed patience and perseverance during that time. They had each other and their belief and faith in God. They prayed so hard and a close and strong family became even closer and even stronger. During that time I was just me. I did nothing. In fact, I pretty much slept through the whole thing so I didn’t have to be strong or brave, everything was being done to me without my knowledge so I just lay down and chilled. The time when I had to be strong, in my opinion is when I went to rehab from September 13th onward. That’s when I was grieving, not that I had lost anything but I had to come to terms with what had happened to me and how to go about getting through the next stage and not giving up. Truly, God is great, if I didn’t have my baby girl, I don’t know if I’d have been as motivated or determined as I was.

I now know and say, my daughter is my kryptonite. She is my one true weakness. She can break me. Yet she also has the ability to build me up again… Kids are great. They are a blessing and a gift from The Almighty ❤